Episode 124: The Disabled Hippie on EDS and Trans Advocacy

Episode 124: The Disabled Hippie on EDS and Trans Advocacy

Overview

Julian Gavino (he/him) is a trans-masculine model, writer, coach, and sex-positive disability influencer living with Ehlers-Danlos syndrome and comorbidities. An outspoken advocate for both the trans and disability communities, Julian grew up never seeing people in media who “looked like” him…and his work has become a direct response to that experience. Many may know Julian through his Instagram account @TheDisabledHippie, which he started during a health crisis while in college for neuropsychology. Now a coach serving the disabled and LGBTQIA+ communities, he has also become a social media expert and co-founder of Disabled with Dignity, a platform featuring disabled stories — by disabled people, for disabled people. In his work, Julian aims to normalize and destigmatize trans and disabled bodies in media — by facing discrimination down and creating space for representation.

Takeaway

Transcript

Julian Gavino The Disabled Hippie Disabled with Dignity Zebedee Models We Speak Model Management representation disability transgender trans influencer coach

Lauren: Okay, guys, thank you so much for joining us. I am here today with a long-awaited interview with someone who you may be familiar with, especially if you're on social media following the pod. You may be familiar with Julian Gavino, who's also known as The Disabled Hippie. Julian lives with Ehlers-Danlos Syndrome, and is here to talk to us about that, as well as co-morbid conditions. And his experience not only of invisible chronic illness, but also of gender and the overlapping invisibility experiences there. So Julian, thank you so much for joining us on the show today.

Julian: Yeah, thank you for having me. I appreciate it.

Lauren: Oh, it's such a pleasure and a total honor. I've been wanting to do this for a long time. In fact, we sort of connected through Ariel, who was on the show last year. And yeah, I'm very excited to talk more about everything you've been through.

Julian: Yeah, there's a lot to talk about!

Lauren: Well, let's dig right in. So I'd love to start at the beginning of your story. Can you tell us how and when you first realized that you were sick and what steps you've taken since then to control your health?

Julian: Yeah, this has been a theme in my life for ever.

I haven't always been physically, invisibly disabled. But I've always been pretty sick.

I started noticing around like age 5. And one of the first things that was going on with me was malnutrition. For many years, from 5 years old on to like 12, no one knew why I was malnourished. I had been on and off feeding tubes. And then another thing that was really kind of significant was migraines. As a very, very young child, I would get migraines and be vomiting, and it was just very, not normal. And then into adolescence, it was dislocating a lot of stuff. And it was passing out. Just started to kind of get worse over time.

Lauren: So this sounds like it was something that you eventually needed to get also mobility aids for, right? Because right now, you use a wheelchair and a cane here and there as needed, correct?

Julian: I mostly use a wheelchair right now.

Lauren: And you have a service dog!

Julian: I do. He’s laying right next to me.

Lauren: Oh, nice. That's lovely. Sorry, I cut you off, though. Because you were saying that you mainly use the wheelchair. But there was something else in there.

Julian: Yeah, I can stand and walk, but not for super long periods of time. It really depends on the day or what I'm doing. I still do try to walk around every day, at least, to keep up with muscle tone and being able to walk. But it's not a way that I choose to leave the house, or anything. 

Lauren: Yeah, absolutely. You want to make sure that you've got backup when you leave the house, as it were, it sounds like. So in this health journey, you mentioned that it started with malnutrition, being on and off feeding tubes, and migraines. Are these all associated with your Ehlers-Danlos diagnosis? And how old were you when you actually got the diagnosis, since this stuff all really started at 5 years old?

Julian: The first thing I was diagnosed with was celiac, which is an autoimmune condition. And also around that time they were looking into my thyroid; they really had thought I had Hashimoto’s, or Graves’ disease or something. And I did have abnormal antibodies in the thyroid, but it was not a high enough number for Hashimoto’s. Because it has to be a pretty significant number. But they've been watching it my whole life. As if it's going to be something that will kind of pop up — which recently it did! 

Lauren: Oh! Welcome to the club! 

Julian: Yeah. Officially. They were, like, “Well, it's finally here, the moment you've been waiting for your whole life.” 

Lauren: What an honor!

Julian: Yeah. So as far as I know, most of the things I have aren’t connected to EDS. We don't know, they’re still very under-researched.

And there seems to be a group of conditions that follow EDS and then sometimes, maybe not.

But we don't know a lot. It's really kind of confusing.

Lauren: I know. We've had Lara Bloom, who's the executive director of The Ehlers-Danios Society on the show, and has taught us a lot about it. It is one of those frustrating conditions, isn't it. Because, as you say, it is under researched. It's underfunded. Now, we understand that there are possibly upwards of 15 different kinds of Ehlers-Danlos Syndrome. And of course, because there's not enough funding to do the research, we don't know if they could be slightly different conditions yet. So there's still a lot of work to be done in that space, right?

Julian: Yeah, so it's hard to say what parts of my conditions are responsible for autoimmune, or neurologically. Or if it's the EDS causing all of that. You don't really know, and no one I've met has ever been able to tell me definitively.

Lauren: Of course. And it's also hard to find practitioners, I imagine — which we're going to get into as well. When your symptoms started, they were stomach and then neurological. Do you still have these similar symptoms? What have they developed into as an adult for you?

Julian: Well, the thing that's been the most significant in my adult life is the neurological difficulties that I've had. When I was 18, and had just started college, I was diagnosed with a de-myelinating type of neuropathy. It sort of mimics MS in a way, where it is relapsing and remitting, and it's very sensory motor affective. So that has been really difficult because it will attack or come on, and I'll lose an ability or lose function, and then I have to try to work and gain it back. Sometimes you can, sometimes the damage is too much. That, for about six years, has been really rough.

Lauren: Wow. Again, we don't know enough about this. It could be related to the EDS, or it could be something entirely on its own, couldn’t it. 

Julian: Yeah, I have no idea!

Lauren: Yeah. What is that like for you emotionally, to have conditions that you don't seem to totally have control of and to not really have answers to, in terms of being able to put a label on it, or being able to understand things through a medical lens, because there's just not enough information. What does that do to your emotional state, especially when you're in flares?

Julian: When I was younger, I had all this weird array of symptoms … I was always really scared.

Even at night, every night before I went to sleep, I told my mom that I was afraid I was gonna die in my sleep.

That's because I didn't know what was going on. So every time I felt something weird, I was like … oh, no, I'm gonna die. So finding out, slowly, things that align with what I've been experiencing, just in itself is comforting. Even if I don't have direct answers … like, what’s going to happen? Or like, how long will I live? I don't have these definitive answers on what's causing this. But I still feel so much more comfort than I used to. Because it's tangible to something.

Lauren: Absolutely. That makes a lot of sense. And especially as a kid when that kind of stuff is happening. Especially, lacking awareness of disability and chronic conditions … it's got to be even more scary then, too.

Julian: Yeah, absolutely. I grew up female, and as we know, a lot of the times when you are female, things can be blamed on anxiety, or hormonally, or it's your period, or you’re mentally ill. That happens disproportionately to women versus men. So, you know, there's that aspect of it also.

Lauren: Yeah, that's certainly played into your experience for sure. You mentioned that you would tell your mom before you went to sleep that you were worried about dying in your sleep. Did you find along this health journey from childhood to adulthood that you needed a personal advocate at any point? Or was that something that you developed into yourself?

Julian: That's definitely something that I had to become on my own. I did have support, but my friends didn't really understand. My partner that I was with didn't understand. She would try and be supportive, but she just didn't really have a caretaker personality, or an assertive personality. And then my mom and my grandma, they both have EDS. But they didn't know. I was diagnosed first, and then we figured out that both of them have it. So they both had spent their whole lives trying to figure out what was wrong with them, and never coming up with answers, or being misdiagnosed. So it was all very discouraging, and I had to really pull from myself on that one.

Lauren: And this is a huge part of who you are now as well. Not only have you become an advocate for yourself, but you've also been very public about your advocacy in the disability space. I'm wondering also whether that journey to public advocacy, that speaking out on social media … whether that's also been something that has affected your relationship with yourself? Has it helped you develop more confidence? Is it something that you had to fight through to get to? What’s that been like for you emotionally?

Julian: A journey. When I started my Instagram, I did not expect this. I started it when I was sick in college, and I couldn't work and I had to take a break from school.

I started it as a way to self-cope, because I felt alone. And I felt like no one understood.

I wasn't really expecting people to relate, or reach back out. Because I really didn't think there was anybody who was experiencing all these weird niche things that I was experiencing. But it turns out there are, and it turns out that it helps other people. So I was, like, okay, I'm gonna go with it, I guess!

Lauren: So much of what you do is about all of the different things you've been able to accomplish from a wheelchair. All of those different things you've been able to accomplish, despite our personal hang-ups, whether they're related to frustrations about disability, or relationships, things like that. So much of what you do is about shedding light, but also showing all of the beauty in the varied experiences that people can have in this disability world, right?

Julian: Yeah, exactly.

Lauren: It's been quite a few years that you've been sick now. And I'm wondering what a typical day looks like for you, as you're balancing the demands of work and life. You mentioned having to leave college because you couldn't work. How are you managing symptoms day to day around the demands the world puts upon us to be constantly working?

Julian: Well, of course, I’m on a lot of medications, as probably are most chronically ill people. I do infusions. At this time, I have a feeding tube. So a good portion of my day still involves taking care of my health. Whether it's seeing the nurses that come to my house, or the OTs or the PTs, therapies. Even just caring for a feeding tube — all that stuff takes a lot of time. When I'm not doing that, I'm working on my laptop, or going outside, or taking care of Atlas, my dog. You just adapt, you adjust. It's things that a lot of people will say, “Oh, I could never do that.” Or, “I would rather die or something.” And it’s, like, no, it can suck, but you just adjust.

Lauren: And at what point did Atlas come into your life? How long has he been around?

Julian: He’s been around for a couple of years now. He's 4 years old. I got him during a really rough time in my life, where my mobility was not the best, and I was requiring a lot of help through family and my spouse and friends. And I was trying to go back to school. I wanted to be independent. I had known a few other people in the community to have service dogs, and they found it helpful. So I started to look into it as something that might help me gain some independence back.

Lauren: And has it been a positive experience working with Atlas?

Julian: Yeah, absolutely. He's incredible.

I've never had a living being care about me so much.

Because humans can care about you, but he doesn't care what I think about him or what he thinks about me!

Lauren: It's unconditional in a different way, isn't it. 

Julian: Exactly. 

Lauren: And I imagine there's also a mental health component there too, right. We know that when you live with chronic illness, and disability that mental health support’s really important. Are you finding that Atlas is able to help you, not only from a physical place, but also when you're having … whether it's depression or anxiety about your conditions, about your day-to-day? Is he also able to help with those kinds of situations, too?

Julian: Yeah, mentally, he's been great. He definitely helps to relieve stress. I think I've heard before that petting dogs lowers your blood pressure, or something? They're very helpful in that sense. And definitely with confidence as well. He's really, over the past couple of years, helped me to feel like I can do things on my own. Well, with him.

Lauren: That you're more independent because of him.

Julian: Definitely. He makes me happy, too. I can never be mad at him for too long.

Lauren: I'm also wondering, now you have more perhaps visual signifiers, from your mobility aids. But in the past, as your conditions were developing and progressing, and even from time to time now, when maybe you're without your wheelchair, or maybe even for a moment without Atlas … have you ever found yourself in situations where you've been confronted and forced to justify or validate the existence of your diagnoses to people who couldn't understand them because they just couldn't see them?

Julian: You mean before they were visible?

Lauren: Yeah. But even now, if it's something that people don't understand why you're in a chair, or why you have a dog. I think there's a lot of judgment attached to that. I'm just wondering if you've been in situations where you've had to validate for other people that there was something legitimate going on, because they just didn't understand.

Julian: Yeah, definitely older people sometimes. This was obviously before quarantine, maybe a few months ago … I had a really weird … I was actually on a date, so it made it even weirder.

Lauren: Oh gosh, was it a first date, too?

Julian: No, it wasn't, but it was still someone I didn't know very well. We were taking Atlas to the park, and I was using my wheelchair. And I could only go so far into the park because the concrete ended and there was grass. And grass and wheelchairs, just no. So I stayed on the pavement.

And this older man came in with a walker, and he pointed at me. Which, first of all, don't point at people.

Lauren: Because that’s just rude. 

Julian: It was starting off badly already. And he was, like, “Why are you using that wheelchair?” And my date pointed back at him, and said, “Why are you using that walker?”

Lauren: Oh, I love that. This sounds like a great date! Okay, perfect.

Julian: No, I was, like, wow, okay. This person barely knows me. But he’s sticking up for me. Yeah. He just didn't know what to say. He was, like, “Well, I'm old and you just look so young.” And I was, like, “Yeah, I was just born this way.” Any time someone asks me, “What’s wrong?” Or, “What happened?” I'm always just, “I was just born this way.” Because what can they really say to that?

Lauren: Yeah, absolutely. It's interesting that you bring this thing up, this idea of disability being an elderly experience, right. So much of the stories that I hear from people in our Spoonie community, it's always that they're being discriminated against or commented on because they look young, so they should be well. This idea that because you're young, you must be well. In being so public about your experiences on social media, you're de-stigmatizing already. But it's interesting when you come across people who are just not as progressed in their awareness, I guess, right?

Julian: Yeah, it is interesting. Because a lot of them I've had, have had to do with age, I guess. Or before I presented as male, either had to do with gender. They seem to have to do with very surface-level things. They don't really have any backing of evidence to them.

Lauren: No. And they also don't reflect who you really are, do they. These are limited ideas of what a person is because of some minor signifier, be it a wheelchair or otherwise, right?

Julian: Yeah, exactly.

Lauren: For those who are tuning in right now, Julian is quite open about the fact that he's trans. And we're going to talk a little bit about that. But you mentioned that you were born female, and that you had experiences in the medical system where people wrote you off as the “hysterical female”. In terms of your experience in the healthcare system, have you experienced either prejudice because of being female, maybe, or privilege? As you have transitioned, has your experience of the healthcare system been smoother because you're presenting as male now as well? And can you see your circumstances being different if maybe you presented otherwise — if you were a person of color, or something like that?

Julian: Well, interesting you brought it up, because I was just talking to my partner about this yesterday. I explained to her that my life has taken a very interesting evolution of experiencing prejudice when I presented as female, for being an “hysterical lady”. And then I presented as male. I lived in the trans community … we say as stealth, for a while … which is, I was undetected as a trans person, I passed 100%. And I didn't tell people I was trans. Some people choose to do that, because it's their choice. And some people do it for safety reasons. I did it because I felt like I had to, to conform to the people around me.

When I presented that way, I experienced privilege in not being questioned as much.

And getting treatments faster, getting things done, getting way better ER treatment, just astronomically different. So much to the point where actually I partnered with someone to write an article about this. And this was one of my Instagram posts that took off in my early days of writing. Because a lot of people were, like, “I had never thought of that or heard of that before.”

Lauren: You’ve really experienced both sides of the coin that way. 

Julian: And now, even though my birth certificate, my license, everything says male, and as far as the federal and Florida laws are concerned, I’ve completed everything to be considered a male … now that I have longer hair, have nails, and maybe to some people look a little bit more ambiguous … now I experience discrimination in that aspect. Because people can “tell" that I'm trans. They can tell that something is … I don't know … different, or however you want to word it.

Lauren: So it's almost like these perceptions, the boxes that the outside world expects you to fit into kind of, don't really leave room for individualism, in the sense that you're expressing yourself individually, do they? 

Julian: No, like I said, they all have to do with these very miniscule surface-level perceptions.

Lauren: Well, as you say, your hair, your nails, things like that, suddenly are signifiers to people that maybe they're dealing with something they don't understand. Do you think that’s something where people are not understanding, so they're reacting? What is this sort of main reaction that you're getting? Is it one of fear, like a discrimination that comes from fear? Is it confusion? Do people actually ask questions, or do they just make presumptions?

Julian: Both. I can give a specific example, kind of coming to my present of this evolution that I described. I wrote a post about it. It's my most recent one. 

Lauren: We will have to highlight that for the listeners on the webpage. 

Julian: Definitely. I described that I was recently reached out to by “an institution” — for protection reasons — of somewhere that had been treating me. And they needed to make me aware of the fact that there were people making threats about me.

Lauren: What?? This was a medical institution that had treated you?

Julian: Yes, I was just recently there, like a month ago. Apparently they had gone through my social media.

They were going way, way back in my files to “document” the fact that I was trans and there's text message evidence of this, apparently, because someone else told on the person.

It’s all transphobia essentially; it all has to do with the fact that I don't appear the way that they think I should appear. I don't look how they want me to. So I think it's fear. A lot of the times you hear about this. And when there's violence against trans people, it seems they seem to think we're lying to them, or something needs to be exposed, or they're finding out something about us that we were withholding from them.  It’s all all these weird …

Lauren: … like, expectations, isn't it?

Julian: Yes. Yes.

Lauren: To clarify, the threats that they described to you, were they threats that were coming from the public and other patients, or threats that were coming from within the care team?

Julian: Care team.

Lauren: Oh, my God, that's so inappropriate.

Julian: And it makes me incredibly nervous because I was unconscious during a lot of this hospital stay. And they were thinking about hurting me.

Lauren: That’s really scary. 

Julian: It made me think, would that have happened years ago to me when I fully presented to others as male?

Lauren: Well, I suppose it does behoove them to inform you. But at this point, it also behooves them as an institution to be suspending these caregivers, these practitioners, and to be making a statement to the state board, one would think. Because any practitioner who's going to treat someone, or refuse to treat, or be prejudiced in their care, it seems, and who has been vocal about that … it seems like they don't deserve a place in a facility to treat anyone, do they.

Julian: No, as a medical care professional, you take an oath saying that you're going to protect and treat individuals, no matter what they are, what they look like, what they do.

And to think that somehow these people slipped through the cracks, and think about either withholding a medication or accidentally giving the wrong one, or hurting someone, or just something horrible.

Lauren: And it's not something you should have to be thinking about. When you're seeking care from someone, you shouldn't have to be thinking about an additional threat to your health. It should all be about making you better.

Julian: Exactly.

Lauren: Wow, that's really scary. And so is that something where you're probably not going to go back to that place, right?

Julian: Well, I'm moving, so …

Lauren: It's gonna work out anyway.

Julian: So hopefully before I move, no, I don't have to go back there. I fully intend to take action against this, obviously. Because I don't want that to happen to somebody else.

Lauren: But that also raises the question of how much of this is your responsibility to take care of other people when your own care is in question. Do you feel a responsibility to the rest of the disability community, and particularly trans disabled individuals, to make sure that, as you say, this doesn't happen to anyone else in the future?

Julian: I always feel responsible, yeah. And I think that’s hard. I've been trying to do steps towards taking care of myself lately, especially with everything going on, so much going on in the world. It always makes you feel like you need to talk about something, or advocate for something.

There always is something to fight for. But it's important to rest also, and take care of yourself, or you can't fight for it.

Lauren: Absolutely. I’m just wondering about invisibility versus visibility. And in terms of your experience of gender and your experience of chronic illness and disability, have there been overlaps and experience that have reminded you of your invisibility or passing in these kinds of circumstances? Whether that's people perceiving you as one gender or the other. Or people perceiving you, as well, because you're young. Can you see there being these connecting tissues, that sort of connect your experience of gender to your experience of disability as well?

Julian: Yeah, I definitely think they all have, I guess you could say, pros and cons to them, or what have you. It's a pro, right now being myself and being the person I want to be. Even if the other day hearing that news made me want to cut my hair, take my nails off, and appear more masculine, for safety. I know I can't do that, because I won't be happy. But at the same time, when I did that, I might have been safer. And then, as far as disability goes, when you appear disabled, let's say with a mobility device, sometimes you're treated better than when you didn't appear with an aid. Sometimes people will, I don't know, “believe” you more, or help you more, which could be seen as a pro. But then also, when you don't appear “disabled”, people might not believe you as much or, you know, they'll say, “Oh, but you look fine. You can keep doing this thing.” And so they definitely all overlap in a sense of, they all have their own unique experiences and advantages and disadvantages for all of them.

Lauren: It's interesting that for you, the thing that really comes up is this idea of safety. You know that you may get more care or more personal regard from people, or feel safer from threats of violence from other people, depending on how you present to the world. And the fact that as a patient, you're having to also consider these additional concerns, this concern of safety, when you're already dealing with managing a chronic illness and several diagnoses. That's a huge burden to be carrying. I mean, that's a really big emotional toll I imagine that's taking as well in terms of that grappling between being yourself and living your truth, and speaking your truth. Versus, being what other people need you to be — from both a disability and gender perspective, right? 

Julian: Yeah, it's sort of like I said in my post … the scales that we have to weigh are pretty heavy. In both of these intersectionalities. Do I be happy and keep being myself and painting my nails because I like to paint my nails, or do I chop them off because there's other people who don't like them and they might want to hurt me because of it. It's very dark and heavy to think about that stuff day-to-day.

Lauren: And especially when you're getting letters from medical institutions saying that they have staff members who've been threatening you. That's the kind of thing that has got to really make you consider where you are. And probably a good thing you're moving, right? Because hopefully you're moving to a place that is much more accepting of individuality that way. 

Julian: That’s the plan. Yeah. But at the end of the day, I can't just dismantle everything I've done, because there's people who don't like it. That's not how we're going to progress and make change. It's scary to be yourself. And it's scary to take these risks, and bad things do happen sometimes to people. But I would rather die being the person that I want to be. I don't want to go backwards in time.

Lauren: And you don't want to dim your light, as it were. Can you talk to us about your advocacy work specifically? We know that you're very public about your experiences through social media, your writing, your modeling. Can you tell us about what you have been working toward, in terms of chronic illness and disability advocacy in particular?

Julian: ... 

So mostly, I aim for talking about things that people don't want to talk about, or that they're not used to talking about.

With a lot of minority communities, we have these specific narratives that get told over and over again. So, I like to work changing that up a bit. And really getting down to those intersectionalities, getting down to the stuff that we don't talk about often. And it's stuff that people are not used to seeing, or that might make them uncomfortable. But it's important, that's how we learn. And that's how we grow. I want people to come to my platforms and learn something. And as far as modeling and media work that I do, I do that because I want it to be normalized. I want disabilities and trans-ness, whether that’s people looking conventionally masc or fem, or people looking unconventional like me, I think it's all things that need to be represented. I don't always think that it needs a big storyline behind it. Like when a disabled person’s in media, and the show has to be about them because they're disabled. I think that we should be able to just exist sometimes. I think that's important. So those are kind of the main themes of what I would like to see come from the stuff I do. 

Lauren: I mean, it's interesting, too, because as you say, that idea of someone being able to just exist as disabled without having to be the center of the conversation. The narratives that have been structured around these ideas that people have of disability and signifiers of disability, you almost have to dismantle them by playing the game, right. You have to go and walk a runway. Or make your experience the center of the conversation in order to understand, for the time being, where we're in this place of de-stigmatizing those experiences. We have to follow that narrative until it becomes spoken about so much that it's no longer the only narrative, right?

Julian: Yeah, and I've actually started to … if someone's listening that's been following me for like a long time … people might notice my Instagram has changed a lot over the course of a few years. I've talked about my health less than less, or at least the details of my health. And I've done that on purpose because I don't want it to be the center. I am disabled, but I don't want that to be the entire conversation. I want it to be, like … yeah, I do all these things. There's this, this, and this and I'm disabled. And it's a part of me, but it is not all of me.

Lauren: Yes. This idea of how much of our identity is encompassed in a single diagnosis, or a single gender marker, whatever it is. You’re trying to get people to understand that it's not all about these boxes. That we understand people's existence, and it's a much more nuanced conversation than that.

Julian: Yeah, and I think the media is so important to tackle because the media has real-world implications on those people that are portrayed, whether it's a trans person or a disabled person we're talking about in my case. That’s where people are learning their information. That's where they're getting their information.

There are some people who don't even know a disabled person. So it's really important how we portray that in media settings.

Otherwise, it affects the real person.

Lauren: Can you think of any examples that you have encountered that were a good use of representation of disability and media?

Julian: There was that one show, I think it was called Superstore?

Lauren: Oh, yeah, Superstore. It's still on. It's an NBC show. And there's a disabled guy who uses a wheelchair.

Julian: Yeah. You can correct me if I'm wrong, we might have to look it up … I don't think he is actually disabled?

Lauren: I don't think he is either. I think you're right.

Julian: Okay, so that's one point that they lost. But I will give them another point, and that would be, I don't think that they've ever talked about his disability. Not at least as far as I've watched in the show.

Lauren: I think it's come up once or twice where people have said something like, “Yeah, we need to go over there.” And he's been, like, “Guys, I'm in a chair.” Just sort of reminding people. But it's never been, as, as we've just been discussing, the center of his narrative, for sure.

Julian: Yeah, it's never been like that episode where it's this tragic situation of his story, his backstory. He just exists, and he's just disabled. And I think that I've never seen that before. I remember I was watching it with my mom one time, and I was, like, “Do they ever talk about this?” And she was, like, “No, he's just there.” And I’m, like, “Wow, that’s nice.”

Lauren: Pretty groundbreaking at this stage.

Julian: Cool, yeah. If you've ever watched a show, and maybe there was a family and they have a disabled kid, they never just can have a disabled kid. It has to be about what's wrong with him? Or how do they cure him?

Lauren: You're absolutely right. There have been entire shows built around those kinds of narratives. So it's a really good point you make. And you also coach people, too, right?  I know that your expertise is certainly your own experience. So are you also coaching people who are in living in similar spaces, who are perhaps disabled, chronically ill?

Julian: Yes. I went to school for neuro-psychology. That was the route I was going to go. But not long after school, I decided to do some life coaching certifications and classes. Because at that point, I was just too sick to go back to school. I started that because it was my experience, that's what I was comfortable giving people advice on, obviously. As of right now, most of my clients, they're all either trans or disabled, or both.

Lauren: So in a sense, you're also, through your clients, diversifying your understanding of your own experience, right? Because they're clients who are having experiences that have intersected with your own.

Julian: Yeah, they absolutely teach me things all the time.

Lauren: That's really wonderful. So, I wanted to pivot a little bit and dig into the healthcare system. I know we've talked about some of the ups and downs that you've had personally. And I'm wondering in what ways you see the US healthcare system working for patients, if at all. And in what ways you see it falling short and requiring improvements. What are the pros and cons of this system that we have set up here in the US right now?

Julian: Oh, that's a tough question. 

Lauren: It’s a big one. I know, it's loaded!

Julian: Oh, man.

Lauren: I know, it is a loaded one. But even if It's just a couple of bullet points, things that have occurred to you over the years, whether it's through your coaching or through your own experience. Particularly things that need to change. But if there are things that maybe don't need to change because they are working … Spoiler alert: very few people have said that things are actually working! So we're open to just criticism here. But yeah, I just would love to get your take, because I know that healthcare systems from country to country really differ. And, indeed, from state to state, depending on your health care coverage and accessibility. So I'm curious to know where the healthcare system needs to change, where it needs to improve and build space for the kinds of narratives that people who are living with chronic illness and/or are trans, are living with.

Julian: Well, in case you wonder, Florida sucks at health care. It's all very elderly-centered. That's where most of the funding goes. So if you are a younger, ill person in Florida, it's not too great for you. This is something I have been working on for a while, with writing to government officials and actually working with someone on the health board; I helped her write an article for this. And I think protocols for gender identity and for trans-ness or non-binary-ness is definitely something that needs to be worked around. We face a lot of discrimination, like I just explained, or sexual assault in medical settings.

There definitely needs to be a protocol for not divulging someone's information, a way to ask their preferred name and pronouns.

Lauren: Which is as simple as just asking, isn't it.

Julian: Yeah, it's because it's so apparent that when you speak to healthcare professionals, they have no idea how to speak to trans people, and it can be very offensive and unaffirming. So I would like to see a protocol in place for that. Definitely … I don't know how we'll do this … but one problem is the fact that the medical system is not built for chronically ill people.

Lauren: This is the thing that comes up time and time again.

Julian: Especially ERs, or even hospitals. Honestly. I can't tell you how many times I've been to the hospital and they can't help me. They don't know what to do. Because nobody knows about EDS or this or that. Nobody knows. 

Lauren: That’s a major problem, isn't it. That's something where, if you're going to be in an emergency room, you have to be educated about everything.

Julian: Exactly. And the long-term care as well, like the expense. Obviously, health care … it's in America, it’s like a business. It's way too expensive. And I've had way too many friends die because they couldn't afford a treatment. It's barbaric, honestly. People shouldn't have to be making GoFundMes for their cancer treatments.

Lauren: That really covers the main things. Obviously, there's more detail as you get into how things are run state by state, hospital by hospital, insurance company by insurance company. But the meat of the discussion here is that what you seem to be getting at, this idea that healthcare is not a human right in this country, that there's so much expense involved in both short- and long-term care.

Julian: And that is not accessible either. I even have clients — they are cisgender, whether it's male or female, and disabled, white — and they still have issues with this.

I don't know who gets benefits from it, because not even the supposed privileged people seem to be getting benefits from it, at least from those I talk to.

So I don't know. And then it just gets worse from there, the more minorities that are intersected. It makes me wonder who benefits from it. Because I really don't know. 

Lauren: Well, the insurance companies! I think they're the ones benefiting, and a few politicians at the top of the ladder there. You bring up a very fair point.

Julian: I don't know any patients, though. It doesn't seem that that's a thing.

Lauren: Absolutely, I think that's a really fair point. So, I wanted to pivot us into what will be the the ending questions, the last two questions of the interview. And they're a little more fun than this question about health care, I promise! The first I wanted to ask is, you're someone who's lived with disability for a long time, and you coach people who live with disability, and you're an expert, right! I want to know what your Top Three Tips are for someone who maybe suspects something is off, health-wise. Maybe they're about to enter this world of chronic illness. Maybe they're already living with a diagnosis, maybe it's EDS. What would you recommend for people who are about to be living a similar life from a healthcare perspective?

Julian: You have to know your own body. You have to believe, no matter what people are telling you — whether it's your family, even if it's a doctor, and nothing has come up in your test yet, or something — you’ve got to believe your body. We know when something is wrong. And we know when something is off. Sometimes those things might take years to develop.  I was telling you about the thyroid thing … it had been looking odd my whole life, and then it finally came to a head. And that's very possible; it doesn't mean someone is lying just because nothing's showing up. A lot of people think that's the case. So that would be my best advice — you've got to believe, and stick to that. That's what I did. I faced a lot of adversity in that sense. But I just kept going, because I was, like, I know something's wrong. I know it is. Because no one from the outside can tell you that.

Lauren: Yes. So true. What else? What other tips would you give? Number one is trust yourself, trust your body.

Julian: A lot of advice that I give my clients is about productivity. That's a huge one that I talk with all my clients about. There’s so many people that come to me and say they don't think they're worth anything because they can't finish school, or … I don't know, they're not married yet. Because their illness has affected every aspect of their life. So that advice would be, it's not linear.

Your life is going at your own pace. And you have to make sure to take breaks for yourself. And rest. You can't always be productive.

You can't always be doing what other people want to do. Even if your brain is just as active as it was before you were disabled. You have to listen to your body. Sometimes I get ahead of myself; I'm like, oh, I can do all these things. Because my brain is so ready. My body's not. So you have to listen to that. Realize it's okay if you go a little bit slower than other people. You can still find your own little ways to be productive, and that's just as worthy.

Lauren: Yeah, I like that you bring that up. That hasn't come up a lot, but it's so true. And it's certainly a common theme among so many of us who live with chronic illness. So, listen to your body. Productivity is not necessarily how your worth is measured. What else? One more tip for people who are living that Spoonie life. Well, I'm wondering if it's something about advocacy, too, because so much of your experience has been about that. You've learned how to advocate for yourself. How can people do that? If they trust their bodies and they know what's going on? Do you have a piece of advice for being heard, being believed and listened to?

Julian: Persistency. You’ve got to stay persistent. You can't just give up because a couple of times someone told you you were an anxious lady, or something. There is a doctor, and there is a person, that's willing to sit down and talk with you and listen. The doctor I have now is amazing. He’ll spend hours with me. He takes time with each of his patients. Someone like that does exist; you really just might have to look for it, especially if you're dealing with an invisible condition, or a rare condition. But you can't give up. You have to do your own research. Definitely. It's okay to come with facts and with research. I think we think of doctors as these all- knowing beings; we’re, like, oh, well, the doctor knows that. Yes, they know things. But they also have opinions. You can go to one doctor and they'll say one thing, and another doctor might say another thing. I’ve had doctors tell me many different reasons as to why I have seizures. They all know I have seizures. They've seen it, they've seen it on my brain scans. There are tangible things, but there's also opinions that play into that. Doctors can be wrong. It's okay to come prepared with your information. And if you hear them say something that you know isn't true, it's okay to say, “Well, I've looked that up before,” or, “I've gotten this other opinion.” It's even okay to just walk away and go somewhere else.

Lauren: And that's all wrapped up in that kind of persistence. I think that's a really good point. This is the really fun list that we’re going to end on. It's a list about joy. I want to know what the Top Three Things are in your life that give you unbridled joy. Despite the fact that, obviously, you've had to work around your needs, from a disability point of view. This could be lifestyle management kind of things that you're just unwilling to compromise on. It could be guilty pleasures, secret indulgences, comfort activities, especially if you're having a flare. What are the Top Three Things in your life that make you so happy that you just absolutely wouldn’t give them up? 

Julian: Well, as previously stated, getting my nails done!

Lauren: I know you do love those, and you always have pretty amazing nails! So there you go. 

Julian: That is one thing. It's like a self-care activity of mine that I'm willing to indulge in both financially, and just because …

Lauren: Because it gives you joy, because you get to look at them. And that makes you happy.

Julian: Yeah, absolutely. Speaking to my community, whether it's through my comments, or talking to you. Or in my messages, collaborating with brands that maybe are owned by disabled people, or queer people.

I like connecting to people and feeling a part of the community.

Because sometimes, you can just make a post and it feels disconnected. But I like to stay in touch with people.

Lauren: And that's so important, isn't it, to humanize your own experience, too.

Julian: Yeah. And the last thing would probably be Atlas.

Lauren: That’s lovely. I was hoping Atlas would be on that list!

Julian: Oh, he's looking at me. So that might have something to do with that, because I think he would be upset if I didn't say that.

Lauren: Well, we're very glad you have him because it's always lovely to see you guys interacting on your posts, and everything. And before I let you go, can you tell everyone where they can find you online, too? 

Julian: Yeah, so @TheDisabledHippie on Instagram. That's where I do most of my stuff. And even if I do something outside of there, I always post or link it on there. So that's my place.

Lauren: Well, Julian, is there anything else you'd like to share before I set you free into your evening?

Julian: Thank you! No, I don't think so. I think we covered everything, and more.

Lauren: Well, thank you so much for taking the time today. I really appreciate you being so open about your own journey and sharing, so that so many of us don't feel alone. It's wonderful to communion with yet another amazing member of the Spoonie community. And I thank you so much for all the work you do and all the honesty that you share.

Julian: Thank you. It was nice to meet you, and thank you for having me.

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